Protect Her

Some days are good, some days are bad, and some are just disheartening. Being parents of a special needs child can bring great faith or great disappointment in the facilities we become acquainted with; however, your dealing with humans, which you have to constantly remind yourself. Mistakes are inevitable. No one is perfect. You can only hope that everyone is making a conscious effort to try their very best every day.

Today we got a phone call from the lab at our local hospital, before I go into too much detail there is a story! Alyssa was diagnosed with hypopituitarism 3 years ago during an unexpected one month inpatient hospital stay. The endocrinologist at the time decided that taking nightly injection of the growth hormone would greatly improve her overall health, which it did! She was growing, finally, as well as acting more appropriate. Fast forward to this year, we met her NEW endocrinologist. We did routine labs and noticed her growth hormone level was extremely high, so we lowered the dosage, but he also mentioned her cortisol levels were low, and historically had been. Since this was concerning to him he ordered a stimulation test for Alyssa on February 10th. Fast forward to yesterday, March 20, I called asking about results and how much longer we should be expected to wait, but this was all on an answering machine.

And then, today happened. I get a phone call from the lab manager stating the labs were given to the courier, but they cannot find them. ANYWHERE, They tried tracking them down, but no luck there. And today, it was disheartening. I had to hang up and cry. Its instinctual to want to protect your child, but I’m in a position, as well as other mothers, to try to protect while trying to trust others in doing their job perfectly, in order to help you feel validated. But, we live in an imperfect world. Alyssa has always been a hard stick. Getting blood or an IV started on the first try is always a true celebration. This wasn’t the case during the stimulation test, but it also wasn’t the worst experience we’ve had.

Its hard to feel like I am doing my job properly when I can’t protect my sweet cupcake from the little things. I feel so guilty having to reschedule the appointment. I feel so guilty putting her through all these things. I feel so guilty, when she starts crying or getting nervous, and I have to tell her to be strong, because this is it. This is life, but it seriously makes our hearts ache, because she is such a great little girl. She has such a great attitude. Appointments, therapies, pokes, labs, and new faces all the time. I feel so disappointed, but to be honest, I’m truly not surprised. I just wish the mistakes of others wouldn’t result in such negative news, and negative experiences for our sweet baby.

Here’s a belated picture of our sweet cupcake on St. Patrick’s Day.




Sweet Dreams 

Dreams can be absolutely magical. My most favorite dreams are the ones where I can hear Alyssa calling my name and excitedly telling me a story, or when she is running up to me as fast as she can to jump in my arms or pull at my pant legs to get my attention. I love these dreams. I hold onto these dreams. 
Are dreams premonitions? I could only hope, but they could also be the answer to my prayers. I used to pray for the material things, begging God to let me see Alyssa walk one day or to at least let me hear her call on me, or tell me loves me. But at 4 years old,  I understand these things aren’t part of her journey right  now. I can feel her love. I can feel her happiness. She signs “Mom” and “Dad,” she’s extremely expressive. And she can roll right up to me when she’s using her standing wheelchair, so it works, and I am thankful. But He knows those desires lay deep in my heart. And when I fall asleep at night, He let’s me take a peek. 

Those are my most favorite dreams, of my most favorite girl, being absolutely free. 

Goodnight cupcake.